In the days after I was diagnosed with dermatomyositis, I had no idea what would happen to me. I knew little about autoimmune diseases, and this one was about as rare as they come.
To ease my trepidation, I ordered hot and sour soup from our local Chinese dive. I shoveled and savored spoonful after spoonful—as though the final slurp would be my last. My worries about life’s daily helping of bullshit melted away. My girlfriend’s concerns about her bridesmaid dress seemed trivial.
I recalled the articles, statistics, and prognoses I read online and pondered what the rest of my life would look like. Would the few available treatments work? Would I be on prednisone for a decade before dying of liver failure or Cushing’s disease? Would I make it another five years?
Fast forward eighteen months: My concerns, though understandable, could hardly be justified. Not one of my eight doctors was worried about premature death. Most said the condition could be managed. And it has been—without prednisone.
Before dermatomyositis, I often let my anxiety determine my future: I spent my days waiting for the next paycheck, for the next vacation, for life’s next major milestone. I spent my nights tossing and turning over what was to come. Like a fortune teller, I feigned awareness of my future. Like a prophet, I predicted imminent doomsdays if my plans fail to come to fruition.
Having dermatomyositis has taught me I cannot hang my happiness on some idealized future. Come what may, I have to accept myself as I am and my life as it may be.
As that bowl of hot and sour soup taught me, life is full of small victories and everyday joys. One would think someone like me, who indulges in fine wines, whiskeys, and world cuisine, would celebrate those happy moments. But the small things in life are easy to forget. And sometimes, those small things are the best part.
